This is the conclusion of my TBI series for Brain Injury Awareness Month. Thanks for reading!
People do not know what life is like for TBI survivors and their loved ones. Our goal in sharing our story is to bring awareness. Empathy for others requires trying to see things from a different point of view other than our own. Brain injuries are not always visible, however, when brain function is permanently altered the repercussions are enormous in daily life. Even those who are high functioning, like Bill, are forever changed and spend the rest of their lives trying to figure out how to live life as best they can. It is easy to jump to conclusions about those who don’t appear to have it all together when you meet them in day to day life. We would caution you against doing so. You never know what someone is dealing with; we are proof of that fact.
We have each shared a portion of our story. The horror of the accident itself, and the aftermath. Bill’s chapters were exhausting for him. They took a lot of mental reflection and energy to write. There are about 20 more symptoms and even combining some of them, there are 10 chapters still incomplete. We didn’t get to them because he needed a break from thinking about it all.
Once we took a break, neither of us have found the internal energy to pick it back up. It is painful for him to see these things and how they still affect our lives. It is hard for me to sort the hours of discussion into coherent text that reflects his point of view, in his own voice. Sharing parts of this with you now has brought it back to the forefront, so maybe we will try again to finish this book. It’s been sitting in my computer for years, waiting for us to have more courage to continue.
Where We Are Now
We get asked by those who are aware of our circumstances why we don’t apply for disability. Bill’s on-again-off-again work history is tortuous for us, particularly for him when trying to explain in an interview, his multiple career changes. The answer is we have applied. We have been through the long arduous process of paper work and denials. We finally made it to a hearing and were told he can still work, even if it is washing windows at McDonalds.
This is true of course, he can still work, but for how long before his injury once again gets in the way of holding a job? And as his brain regresses these symptoms will only increase. The neurologist even says disability was made for people like Bill, and that with his type of dementia (yes, she used the D word!) it would be better to get it sooner rather than later. You can even see a picture of his disability on a scan! She is firmly in our corner attempting to help us in any way she can, but the system doesn’t see an injury from 35 years ago as relevant today, and I guess doctor’s opinions only count a small amount.
After our months long attempt, I am too exhausted to start over again as our lawyer suggested we do. Instead, Bill works for himself. He tunes pianos, and he has started a voice over business. Both of these jobs suit him well because he can work when his brain does and doesn’t have to when it doesn’t. He hasn’t had a full time “regular” job since 2016. The same year I left the classroom to start my own tutoring business.
Bill loves piano tuning and he is good at it. He can tell you more details than you ever want to know about how to do it and why. His voice over work is just getting started, but it is in his wheelhouse. With his drama back ground and smooth voice, he can pretty much sound like he needs to sound for any project. These jobs help him to feel that he is more than his brain injury. So, at the moment, we are in a good place. While his symptoms make everything much harder for him, he has more good days than bad ones.
I have four jobs at the moment, which sounds crazy but it works beautifully. In addition to my tutoring business, I work as a part time counseling secretary at a school. That job is what gets us benefits and retirement. I do computer work developing curriculum for another school system from home on my computer. I am a homeless liaison for that system as well, part time. I still have my tutoring business. And I sell my books, pottery and whatever else I make. It sounds crazy and, on some days, it is, but we make it work.
People who read my book Words to the Weary say all the time, they don’t know how it is so accurate each day. They wonder how I did it. But, one woman who bought the book said to me, “Thank you for writing this book and for going through whatever it took to be able to.” She got it. I wrote it out of my long history of walking with God through the hard things of life, of which TBI is but one.
It is our hope that survivors will recognize some of themselves in the pages Bill has shared, and that caregivers will have a better understanding of what their survivor might be experiencing. Awareness is key in any part of this brain journey, so it is also our hope to draw attention to what those who deal with any kind of brain injury go through on a daily basis. Empathy is hard to come by when your injury is invisible. When you don’t understand why someone acts the way they do, give them the benefit of the doubt rather than writing them off. If even one person will do that, we will have achieved our goal.
We’d love to have some feedback on what we have shared. Was it helpful? Why? What could be better? How can we make it better? Are there things we need to take out? Anything you would do differently? As we move forward with finishing this book, it is invaluable to have the perspective of our readers. Feel free to leave a message in the comments or to contact me privately. Either way, we want to hear from you!
If you want to learn more about TBI here are some of the places we found information.
https://www.brainline.org/article/what-glasgow-coma-scale
https://www.brainline.org/article/tbi-101-behavioral-emotional-symptoms
https://synapse.org.au/information-services/impulsive-behaviour-brain-injury.aspx
https://synapse.org.au/information-services/self-centredness-fact-sheet.aspx
https://synapse.org.au/information-services/motivation-and-initiation-fact-sheet.aspx
https://www.verywellmind.com/hyperarousal-2797362
Michelle's Mosaic 
Beautifully written, Michelle. You have helped us all
Michelle,
You are an incredible writer! Telling this story of both you and Bill has helped me be more aware of your journey. Any type of brain insult changes people and those closest to that individual needs all the help possible. Your book will help so many folks so I hope you can finish it soon. I admire you so much because your journey has shown your faith. Many, many women would have walked away. You are incredibly strong. Thanks so much for sharing .
Thank you!
Thank you, Bill and Michelle – and the thank you is sincere – it is beyond my comprehension to understand all you have been through and what an enormous project it is to document it.
Re: Disability insurance. Cases came to my desk, in the years before my retirement, that were a tedious discouraging effort to accomplish – People who had deserved it for years and were still struggling. We struggled together, the patient and family, the doctor and me. When we “won” the battle, it was an occasion for celebration – shouting, smiling, laughing, crying. There were people, much more helpful than me, who specialized in assisting with disability application. By now you probably have a network in place. Also, your own resourcefulness in generating income is amazing.
Re: your documentation process and persistent efforts to share: It is beyond me to “critique” your work. It seems thorough and yet also indicative that you have only begun to scratch the surface of the deepest effects of TBI. – HOW DID IT HELP ME: By opening my mind to the enormity of this diagnosis and condition. Even as a member of the medical profession, my knowledge of TBI was very limited. It is so very much more complicated than it appears. These lessons you have given will stay with me when meeting anyone who appears to struggle with cognitive issues. We (the public) know so little. KINDNESS and PATIENCE are always helpful tools for us. Thank you, again.
Thank you Mary. I love you.
Thank you, Bill & Michelle. I can’t image the courage it took to relive your story. Thank you both so VERY MUCH
Love you both!!!
Bill and Michelle,
Thank you for sharing your very difficult and ongoing journey. It is helpful for those who have no idea what it is like for someone with traumatic brain injury or those they love, to begin to understand the many challenges you face all day, every day. I celebrate that you soldier on together by God’s grace and pray His provision as you continue to walk your rocky road. God has, is and will use our brokenness for His glory. May His faithfulness always sustain you.